Tag: Carcinoid Tumour

It’s no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the SEER database report issued in 2017), there is still a lot of ground to cover. It’s also no secret that certain cancers are difficult to diagnose (NETs is one) and there are a number of reasons why this happens, including but not limited to: – they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood.

I wanted to cover two different aspects of the problem of finding NETs. Firstly, in finding the primary tumour so that the type of NET can be properly established – this drives the best treatment regime. Secondly in finding all the tumours, as this establishes the correct and most detailed staging declaration – this drives treatment plans and surveillance regimes that need to be put into place.

Hunting Tumours – Primary vs Secondary

It’s really important to determine which tumours are primary and which are secondary (metastasis). There’s a number of ways to help work this out and knowledge of NETs epidemiology studies can help.

Specialist Knowledge – certain things are known about the behaviour of NETs

Specialists and in particular NET specialists will be aware of the vagaries of NETs in terms of what tumours are normally a primary and which are normally secondary and many of the pitfalls involved in working that out. Many NETs will have metastasized to the liver at diagnosis, so whilst it is not impossible to have a primary liver NET, the vast majority of liver tumours found will be secondary (metastases). NET Specialists are more likely to have the experience than generalists. They know that the varying metastatic potential depending on the primary site clearly indicates differing biology and genetics across sites and they know that NETs are indeed a heterogeneous group of tumours. The differences cannot be explained by whether the NET is situated in the foregut, midgut, or hindgut. For example, Appendiceal NET is known to be less prone to metastasis. This may be due to the high rate of incidental ﬁndings during appendectomies, or because the appendix is an immunological organ where malignant cells can therefore be expected to be frequently recognized by the immune system.

The majority of the digestive tract is drained by the portal venous system, explaining the dominance of liver metastases in this group of tumours. This also explains our ﬁnding that many nervous system and bone metastases originate from NETs in the lungs. Disseminated tumour cells may directly reach the systemic circulation from the lungs, whereas if originating from the midgut region, they need to ﬁrst pass both the liver and the lungs.

As an example of this heuristic knowledge, one Swedish study indicated that two-thirds of peritoneal metastases will be attributed to Small Intestine NETs (SI NETs). SI NETs and Pancreatic NETs (pNETs) are the most likely to metastasize. The least likely sites to metastasize are the Appendix and Rectum. The same study indicated that in addition to the common metastatic locations of lymph nodes and liver, Lung NETs are more likely to metastasize to the brain and bone than other types. I believe the findings from this study more or less correlates to other information I’ve had access to and also confirms the technical behaviour paragraph above.

There are many other clues open to those involved in diagnosing a NET:

Patient. Very often the patient plays a big part of determining where the primary and other tumours might be by carefully describing symptoms.

Incidental Finds. NETs are very often found incidentally during trips to the ER/A&E and also during tests for something else. This is particularly the case with Appendiceal NETs and might explain why the average age of a patient is significantly lower in this type of NET.

Blood tests and Hormone Markers. We are not yet in a position where these types of tests can diagnose (but we are moving in that direction). In the case of unknown primaries (CUP), sometimes test results can help to find where some of these cancers started. With NETs, symptomatic patients can often test to confirm an elevated hormone marker which may narrow it down to a specific organ or gland. Read more here.

Scans and Endoscopies. Most cancers of a certain size may show up on conventional scanning such as CT, MRI and Ultrasound. Nuclear scans are now playing a bigger part in finding tumours which betray their location through functional behaviour by lighting up or glowing on these imaging devices. Endoscopies (e.g. gastroscopies, colonoscopies, even gastro intestinal pill cameras can be used) can help but like scans are not foolproof). Generally with NETs, if you can see it, you can detect it. Read more here.

Hereditary Conditions. Around 5-10% of NETs are hereditary in nature, mostly involving the MEN group of syndromes. Many of those people will know they are at risk of developing NETs and their doctors should know the most common locations for primary tumours associated with each gene. So a declared or suspected hereditary syndrome is useful in finding primary tumours if they exist and are proving difficult to find.

Biopsies. “Tissue is the issue”. Pathology can very often give really strong clues as to the type of NET and therefore the likely location of a primary tumour, for example additional tests such as immunostains. Many biopsies will come from secondary cancer (metastases), mostly the liver. Despite all the potential diagnostic routes above, the place the cancer started is sometimes still not found and this may lead to atypical diagnostic/treatment plans and in certain cases this might even include exploratory biopsies via surgery (invasive/minimally invasive), perhaps combined with opportunistic tumour removal if found during the procedure.

Staging. Simple staging can be given if locations of metastases are known. For example in the case of Liver metastases, the stage is automatically Stage 4. However, the full staging definition relies on knowing distant metastases, loco-regional metastases and the full Tumour/Node/Metastases (TNM) definition (size, spread, etc) cannot be given without a primary. Read more here.

Cancers of Unknown Primary

Cancer is always named for the place where it started, called the primary site. Sometimes doctors can’t tell where a cancer may have started. When cancer is found in one or more places where it seems to have spread, but the site where it started is not known, it is called a cancer of unknown primary (CUP) or an occult primary cancer.

When you look at the ratio of all cancers, the figure for cancers of unknown primary (CUP) is quite startling. Depending on where you look the figure is around 2-10%. That doesn’t seem a lot but when you consider the amount of people diagnosed with cancer, the total figure must be staggering. Interestingly, Cancer Research UK say that 60% of CUP cases are in the over 75s. In another interesting Swedish study, doctors claimed that the rates of metastatic cases were higher with certain NETs than they were in their anatomical counterparts, reinforcing the dangerous and sneaky nature of NETs.

Despite quite advanced scanning and diagnostic testing currently in place, and the extensive knowledge of NET specialists, there can still be reasons for not being able to find the primary tumour:

The primary is just too small to be seen and is growing quite slow. Very small cancers might not cause symptoms or be seen on scans. This is a particularly relevant point with NETs.

The primary could be hidden in tissue in between different organs causing confusion about the actual primary location.

The body’s immune system killed the primary cancer. It’s also possible (but not common) that any secondary cancer (i.e. metastases) is still growing.

The tumour has become loose from its primary location and exited the body, e.g. from a wall of the bowel and excreted out in the stool.

The primary cancer was removed during surgery for another condition and doctors didn’t know cancer had formed. For example, a uterus with cancer may be removed during a hysterectomy to treat a serious infection.

Summary

I hope this is useful for many NET patients, particularly those who are looking for a diagnosis or looking for a primary tumour.

Neuroendocrine Cancer – at times, it can really be like looking for a needle in a haystack.

Now the dust has settled on the death and funeral of Neuroendocrine Cancer patient Aretha Franklin, the community needs to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and including doctors.

About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said “Pancreatic Cancer of the Neuroendocrine Type”. Her death certificate quoted “Pancreatic Neuroendocrine Cancer”. Despite this, the media outlet which published her death certificate still led the article with the headline “Pancreatic Cancer”. Exactly the same thing happened with Steve Jobs and a few others. And that’s only the ones we know about – how many other pe0ple are being labelled and documented with the wrong cancer type?

I cannot read the minds of the healthcare professionals and media when they compile their press releases and articles but I’m fairly certain they simply do not understand that Neuroendocrine Cancer is a cancer within its own right and is not a type of another cancer. They simply do not understand the term ‘Neuroendocrine’ and they think the readership won’t either, and so it’s probably easer just to leave that bit out. The result is that a person has, or dies with, is labelled with the wrong cancer type, which is then published and embedded into the annals of the internet and spreads like wildfire (fake news), and Neuroendocrine Cancer is once again robbed of much needed awareness. Our community needs to start focusing more on these types of awareness issues rather than continually flaunting pictures of black and white striped animals.

I’m even starting to think that the well known term used in Neuroendocrine Cancer circles, ‘Pancreatic Neuroendocrine Tumor’ or pNET for short, is actually working against us because of the inclusion of the organ as the first word of the term. Going forward, I will be using Neuroendocrine Cancer with a pancreatic primary, etc.

Curium and RadioMedix Inc. announce an exclusive agreement to develop and commercialize 64Cu-Dotatate, an investigational positron emission tomography (PET) diagnostic agent for patients with Neuroendocrine Tumors (NETs). RadioMedix is currently engaged in Phase III clinical trials of the agent and expects to file a New Drug Application with the Food and Drug Administration in 2019. This partnership builds on the initial development work conducted by RadioMedix and will benefit from Curium’s regulatory, manufacturing, distribution, and commercial expertise. The radionuclide is not new, it’s been in use for some time, mainly in Denmark.

64Cu is a PET isotope that can be produced at a central location in quantities to meet the commercial needs of hospitals and imaging centers without the supply limitations of nuclear generator-based PET isotopes,” said Ebrahim Delpassand, MD, CEO of RadioMedix. “Once approved, 64Cu-Dotatate will be available to patients in medical centers with PET capability across the country. This will address the shortage or lack of availability of somatostatin analogue PET agents that we are currently experiencing in many parts of the U.S.”

Ga68 PET Shortages explained

This statement is in relation to the current shortage of Ga68 PET radionuclide. For those not aware, the Society of Nuclear Medicine and Molecular Imaging (SNMMI) has written a letter to the FDA about ongoing shortages of generators that produce gallium-68 (Ga-68), a radioisotope used regularly in medical imaging. The letter—available here.

The letter explains that Ga-68 is currently used to produce NETSPOT from Advanced Accelerator Applications (a Novartis company), which was approved in June 2016 to help treat neuroendocrine tumors (NETs) in adult and pediatric patients using PET. NETSPOT, however, is only approved using specific generators. And those generators are only approved for either 400 uses or one year, whichever comes first. This has led to shortages throughout the United States.

SNMMI notes some possible remedies for this shortage. For instance, “a temporary exemption to the 400-elution limit would have a major impact on NETSPOT capacity for patients,” according to the letter. In addition, using a wider variety of generators to produce NETSPOT or using cyclotron-produced gallium chloride are two other methods that could improve production in a relatively short amount of time. “Further discussion with the manufacturers is necessary,” the authors added.

Read more about Ga68 PET and its use in Neuroendocrine Cancer – click here. Worth also noting that RadioMedix is also involved in a number of NET related initiatives including:

1. Trials for a new type of PRRT called ‘Targeted Alpha-emitter Therapy (TAT) – I’ve written about this previously. Read my article here.
2. An exclusive distributor for the TM Isotopen Technologien München AG (ITM) PRRT product currently in trial. I wrote about this here.

How does 64Cu-Dotatate compare with Ga68 PET and Octreotide Scans?

To learn more about previous studies on 64Cu-Dotatate, here’s 2 articles published in the Journal of Nuclear Medicine which are a head to head comparison of 64Cu-Dotatate with Ga68 Dotatoc and with 111 Indium Octreotide (Octreoscan).

PET/CT (left) and PET (right) scans of patient with intestinal NET and multiple metastases. More lesions are seen in intestinal region with 64Cu-DOTATATE than with 68Ga-DOTATOC.

Conclusion: 64Cu-DOTATATE has advantages over 68Ga-DOTATOC in the detection of lesions in NET patients. Although patient-based sensitivity was the same for 64Cu-DOTATATE and 68Ga-DOTATOC in this cohort, significantly more lesions were detected by 64Cu-DOTATATE. Furthermore, the shelf life of more than 24 h and the scanning window of at least 3 h make 64Cu-DOTATATE favorable and easy to use in the clinical setting.

Conclusion: With these results, we demonstrate that 64Cu-DOTATATE is far superior to 111In-DTPA-OC in diagnostic performance in NET patients. Therefore, we do not hesitate to recommend implementation of 64Cu-DOTATATE as a replacement for 111In-DTPA-OC.

Summary

The shortage of Ga68 PET radionuclide caused by limitations of the generators in use is unfortunate. Reading the SNMMI letter, I think progress can be made downstream. However, the introduction of a new scanning agent could be useful as long as the trials prove its safety and efficiently and is comparable to current tools. There is no news of any plans to extend this potential new radionuclide outside the US but I suspect that would change following an FDA approval.

Background

It has long been observed that certain Neuroendocrine Tumours (NETs) are often associated with their ability to secrete hormones and these substances are thought to be responsible for the collection of symptoms which include (but not limited to) diarrhea, flushing and wheezing. One of the lesser known aspects of this disease is the development of fibrosis, both local and distant. These fibrotic complications may lead to considerable morbidity. They can also result in incidental diagnoses of NETs after causing abdominal obstructions.

The most well known form of fibrosis is ‘Hedinger Syndrome’ (so-called Carcinoid Heart Disease) tightly associated with midgut NETs and will not be covered further. However, mesenteric fibrosis is actually more common and also associated with midgut NETs. There are other less common locations involved including retroperitoneal fibrosis, pleural and pulmonary fibrosis and skin fibrosis.

According to a paper (abstract linked below) by Professor Martyn Caplin (et al) regarding mesenteric fibrosis, “it often has a characteristic appearance of a mesenteric mass with linear soft tissue opacities radiating outward in a “wheel spoke” pattern associated with distortion of the surrounding tissues” (see graphic below).

The mesentery and retroperitoneum areas

The mesentery and retroperitoneum are complex to describe but think of the mesentery as something holding the small intestine together with all its folds and the retroperitoneum describes the part of the abdomen that is generally closer to your backbone than to your belly button, i.e. behind the intestines.

Often labelled ‘Desmoplasia’, it is easily spotted on CT and MRI scans and is one of the unusual features of NETs vs other types of cancer. Some examples are below:

Desmoplastic reaction. The characteristic desmoplastic reaction comprises a mesenteric mass (black asterisks) with linear soft tissue opacities radiating outwards in a ‘spoke-wheel’ or stellate pattern (black arrows) and associated indrawing of the surrounding tissues . Distortion and retraction of the adjacent soft tissues results in kinking of the small bowel and can cause partial or complete bowel obstruction. The mesenteric mass is often associated with coarse calcification (black arrowhead). Metastatic Neuroendocrine Tumor to the root of the mesentery (arrow) causing typical circumferential desmoplastic

Axial CT image of a patient with a metastatic neuroendocrine tumor that demonstrates retroperitoneal thickening and fibrosis (arrow).

What causes it, what problems does it cause and how can it be treated?

As with Hedinger Syndrome, which mostly causes right-sided fibrosis in the heart, mesenteric and retroperitoneal fibrosis (and others) is thought to be caused by the excess secretion of serotonin (5-HT) from NETs. I say ‘thought’ but no-one really knows for sure. There’s a few quite recent studies on the subject which I’ll provide abstracts here.

Uppsala Hospital Sweden. In one study entitled “Clinical signs of fibrosis in small intestinal neuroendocrine tumours” first published in November 2016 by Uppsala Hospital Sweden, it said that it was caused by serotonin and other cytokines released from tumour cells and which may induce fibrosis, leading to carcinoid heart disease and abdominal fibrotic reactions. A cohort study of patients with SI NETs diagnosed between 1985 and 2015 was carried out – a total of 824 patients. Clinically significant abdominal signs and symptoms of fibrosis occurred in 36 patients. Of these, 20 had critically symptomatic central mesenteric fibrosis causing obstruction of mesenteric vessels, and 16 had retroperitoneal fibrosis causing obstructive uropathy with hydronephrosis (the swelling of a kidney due to a build-up of urine). Extensive fibrosis causing mesenteric vessel obstruction and/or obstructive uropathy was more often associated with symptomatic and advanced disease encompassing lymph node metastases in the mesenteric root, para‐aortic lymph node metastases, as well as liver metastases and peritoneal carcinomatosis. Palliative intervention in terms of superior mesenteric vein stenting or resection of central mesenteric metastases and/or percutaneous nephrostomy and J stent treatment was beneficial in the majority of the patients. They concluded by saying that extensive abdominal fibrosis associated with clinically significant symptoms of intestinal ischaemia and/or obstructive uropathy was linked to advanced disease in patients with SI NETs. Prompt recognition and minimally invasive intervention was effective in disease palliation.

Royal Free Hospital. In another fairly recent paper entitled “Neuroendocrine tumors and fibrosis: An unsolved mystery?”, published by Professor Martyn Caplin of the Royal Free (and others), where this issue is discussed alongside the role of serotonin, growth factors, and other peptides in the development of NET related fibrotic reactions. They also suggested serotonin as the main culprit in both CHD fibrosis and in mesenteric/retroperitoneum and expressed many of the factors above. This study suggested that up to 50% of SI NET patients may be involved but looking at both reports together indicates that the first study above only isolated clinically significant cases whereas Royal Free looked for signs in all cases.

Another recent paper (also a paid subscription) from Royal Free (Caplin et al) indicated that the severity of mesenteric desmoplasia did not seem to demonstrate a statistically significant effect on overall survival or long-term outcome (taken from a study of 147 patients at Royal Free London). Sounds like good news but there are clearly consequences that could arise from the issue.

I do not have access to all the texts above, only the abstracts which I’ve linked above (all only available from paid subscriptions).

One older publication authored by known UK NET expert endocrinologist, covered some of the above issues but added that fibrosis in the pleural/pulmonary areas and the skin could also be associated. For ease of reference, the following extracts are cited to Fibrosis and carcinoid syndrome: from causation to future therapy Maralyn Druce, Andrea Rockall and Ashley B. Grossman Druce M. et al. Nat. Rev. Endocrinol. 5, 276–283 (2009); doi:10.1038/nrendo.2009.51

“Mesenteric fibrosis and carcinoid syndrome. Intestinal fibrosis in a series of 37 patients with jejunoileal carcinoid tumors, 8 of 12 patients with bowel obstructions had evidence of fibrosis or kinking of the bowel.6 among 36 patients with carcinoid syndrome who were seen at Yale university, 15 either had fibrosis at the time of surgery, or developed it subsequently. In a surgical series of 121 patients with midgut carcinoid tumors, 75 required laparotomy, due to abdominal pain; of these patients, 59 were noted to have marked mesenteric fibrosis at the time of surgery. Spread of the primary tumor into the mesentery and peritoneum can result in a marked fibrotic reaction. This fibrosis can mat together multiple loops of bowel and result in kinking, ischemia, volvulus and obstruction.

Retroperitoneal fibrosis. True retroperitoneal fibrosis is a rare clinical entity, in which inflammation results in fibrosis throughout the retroperitoneum. In two-thirds of patients this condition is idiopathic. The majority of cases that are not idiopathic are associated with drugs, such as antihypertensive agents and methysergide. Although retroperitoneal fibrosis is not commonly seen in the context of carcinoid syndrome and has not been reported in any recent, major review, several cases have been reported in literature.

Pleural and Pulmonary Fibrosis. In a review of 50 patients with carcinoid tumors who presented to a single unit over 9 years and were examined using CT, 14 patients had pleural thickening, and in 9 of these cases no other attributable cause was established. All 14 patients had developed this pleural thickening within 2 years of being diagnosed as having carcinoid syndrome, and 7 of the 9 patients also had fibrosis elsewhere, for example, in the heart valves, skin or mesentery. Carcinoid syndrome has rarely been described as a cause of alveolar fibrosis, but fibrosis elsewhere in the lung occurs more frequently. in a series of 25 patients known to have peripheral carcinoid tumors of the lung, 19 displayed hyperplasia of neuroendocrine cells elsewhere in the lung, and 8 patients (25%) had lesions of obliterative bronchiolitis, including 2 with asymptomatic obstruction of airflow. These data suggest that bronchiolar fibrosis is not uncommon, although it is usually subclinical.

Skin fibrosis. Dermal fibrosis may be primary or secondary to peripheral vasospasm, which occurs in response to vasoconstrictor substances that are secreted by the tumor. Carcinoid syndrome associated with scleroderma has been reported: in one series, its prevalence was 2 cases in 25 individuals. This complication of carcinoid syndrome is usually a late feature and may be attenuated by the use of cyproheptadine hydrochloride, parachlor phenylalanine and prednisolone, which suggests a causative role for tryptophan metabolism and 5-HT”

What happened to me?

Since I was diagnosed in 2010, I’ve always known I’ve had a fibrosis issue in the retroperitoneal area, as it was actually identified on my very first CT Scan, which triggered my diagnosis. Here’s how the radiologist described it – “There is a rind of abnormal tissue surrounding the aorta extending distally from below the renal vessels. This measures up to 15mm in thickness”. He went on to describe that “almost certainly malignant”. The second and third scans would go on to describe as “retroperitoneal fibrosis” and “a plaque like substance”. Interestingly the fibrosis itself does not appear to ‘light up’ on nuclear scans indicating it was not cancerous (see below).

I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important! Fortunately I had a surgeon who had operated on many NET patients and has seen this issue before. After my first surgery, he described it as a “dense fibrotic retroperitoneal reaction encircling his aorta and cava (inferior vena cava (IVC))”. My surgeon was known for difficult and extreme surgery, so as part of the removal of my primary, he also spent 3 hours dissecting out the retroperitoneal fibrosis surrounding these important blood vessels and managed 270 degree clearance. The remnant still shows on CT scans. Some of the removed tissue was tested and found to be benign, showing only florid inflammation and fibrosis (thankfully). That said, the abstract papers above has led me to believe that my retroperitoneal fibrosis is clinically significant.

Routine surveillance in 2018 has picked up that retroperitoneal fibrosis is potentially impinging on important vessels in this area, particularly the left ureter but including some blood vessels. A follow up Ga68 PET confirms active lymph nodes in the retroperitoneal area that might be contributing to continued or new fibrosis growth.

In order to further assess risk to my kidneys, I had a different nuclear can known as a Renal MAG3. This scan looks at the blood supply, function and flow of urine from the kidneys. The output will inform my MDT and surgical team looking at treatment options to counter the risk of damage and the timing of potential surgery to correct the issue. I’m happy to report that the MAG3 scan confirmed there are no blockages to my kidneys or bladder. It did confirm my right kidney is doing 60% of the work, the suspected left one is covering the remaining 40% effort. Apparently it’s pretty normal that it isn’t exactly 50/50. Surgery is now on the back burner (phew!). The kidney function will be monitored closely going forward.

Summary

These issues need to be identified early on in diagnostics, preventative treatment considered and then monitored going forward. Potential complications may include (but not be limited to) bowel and blood vessel obstructions. Retroperitoneal fibrosis also needs to be monitored as potential complications may include (but not be limited to) obstructive uropathy.

For those worried about this issue, please note that when you look at the statistics from Uppsala, only 4.5% of cases are classed as clinically significant and with the retroperitoneal area, the figure reduces to 2%.

Eight years ago today, I was sat in front of a secondary care consultant, his speciality was colorectal. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy. I changed that plan because this “non-issue” was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour – after all, I wasn’t actually ill!

Rewind two months, I had an incidental set of blood tests ordered by a nurse following a routine visit to my local medical centre (……. “I think I’ve lost a bit of weight”). My haemoglobin was low (even lower on repeat testing). The GP compared my results to someone in their eighties with malnutrition. In hindsight, I should have been alarmed by that statement but instead I went on holiday to Barbados. Apparently low haemoglobin is a sign of iron deficiency anaemia. I suspected it would pass, either my blood results would revert to normal naturally, or they would after a prescription for some pills. That’s what normally happens, isn’t it? I was so indifferent to the issue, I even delayed the blood tests by three weeks.

Back to 8th July 2010 ….I hadn’t really given him many clues but within minutes of chatting with the secondary care consultant (who was armed with the results of the negative colonoscopy test), he said “what are you doing this afternoon“. I had no hesitation in saying “whatever you want me to do“. I’m still not getting it as I saw this as a chance to get an all clear, get some pills, get back to normal. To cut a long story short, the results confirmed I had a metastatic cancer. If you can see it, you can detect it.

Following the scan results, I had a dozen other tests to narrow it down to Neuroendocrine Cancer (eventually confirmed by biopsy). During these 2 weeks of tests, I finally confessed for the first time that I had been experiencing facial flushing and intermittent diarrhea. In those days, I wasn’t really in tune with my body.

I had been sitting on a beach in Barbados sipping piña coladas with my wife and neither of us had any inkling that I had a serious life threatening illness and that it had been growing inside of me for some years. Slow but sneaky? You betcha. They did some damage too – check out my treatment summary here.

I remain thankful to all those involved in the triggering of my ‘incidental’ diagnosis. The Nurse who ordered the ‘just to be sure’ blood tests, the GP who immediately referred me to secondary care (increased my chances of being diagnosed with cancer), the secondary care specialist who was instrumental in getting to the bottom of the problem in double-quick time.

My intransigence, denial and withholding vital symptoms from the doctors didn’t really help – there’s a lesson for all there.

Researchers are testing the drug Sapanisertib to see if it can halt the progression of pancreatic NETs (pNETs) which cannot be surgically removed, have not responded to other treatment, and have spread to other parts of the body.

What is Sapanisertib?

Sapanisertib is one of a group of targeted therapy drugs that interferes with tumor progression by inhibiting an enzyme known as mTOR which a tumor cell needs for growth. In fact this is the same technique used in Afinitor (Everolimus), already approved for NETs.

It is also being tested in a number of different advanced cancers, including bladder, kidney, breast, liver, and certain types of lung cancers, among others.

The Clinical Trial

The primary goal of the phase II study is to evaluate how well pNET tumors respond to Sapanisertib. To qualify for this trial patients must have advanced pNET that cannot be surgically removed, and which have not responded to previous treatment with similar drugs. All participants will receive Sapanisertib, and will be checked periodically to see if their tumors are responding to the drug.

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided at this link which provides more details about the Sapanisertib pNET trial – click here and check the inclusion and exclusion criteria; and other data. There are 354 study locations across the USA.

I am totally astonished to have been able to accumulate 500,000 (half a million) views of my blog. When I first set it up in Apr 2014, it was just to help spread awareness whilst I was walking the 84 miles of Hadrian’s Wall with my wife Chris. I never for thought for one minute I would still be doing it today and accumulate over 11,000 followers across all my social media sites, from all over the world.

My key aims are international level awareness, advocacy, campaigning, and support for NET patients via all my social media accounts. I realise I’m not your regular NET advocate and I do things differently. However, I’m fairly certain that has played a part in getting to this stage.

Many of you who read this will already be on these sites so please ‘Follow’ or ‘Like’ as appropriate – be careful you don’t ‘Unfollow’ or ‘Unlike’.

There are so many other sources of routes into my blog and I’m grateful to the many patient advocate organisations, patient advocates, the healthcare community in general and many, many, more. If you’re reading this, thank you so much.

Please note:All information provided on this Facebook page or any of my social media accounts does not constitute professional medical advice. See my disclaimer here: DISCLAIMER

Diarrhea is a huge subject for NET patients, whether it’s caused by the tumor itself (i.e. a syndrome), due to treatment, knock on effects of treatment, or some other reason, it can dramatically limit qualify of life. Working out the root cause can be problematic even for medical teams. I wrote about these issues before in my article Neuroendocrine Cancer – the diarrhea jigsaw. So when I saw the data from a trial of something called enterade®, I was immediately drawn to investigate. I don’t normally write articles on over the counter commercial products but this one is an exception given that it has been classed as a medical food since 2012 and is also used to rehydrate patients undergoing radiotherapy and chemotherapy for cancer (so not just for NETs).

What is enterade® ?

It’s a drink currently produced in 8oz bottles. It’s a first-in-class, glucose-free medical food i.e. it is intended to be used under the supervision of a healthcare provider. The solution comprises five critical amino acids – Valine, Aspartic Acid, Serine, Threonine, Tyrosine and electrolytes – potassium and sodium.

What does it do?

It’s designed to help manage debilitating gastrointestinal (GI) side effects. With no sugar to exacerbate the GI tract, enterade® supports the small bowel’s ability to absorb fluids, nutrients, and electrolytes and leads to improved digestive function. By helping to restore normal GI function, enterade® reduces diarrhea and dehydration, leading to a significant improvement in the patient’s overall quality of life and a healthier GI tract.

Is there evidence that it works?

Since May 2017, it’s been trialled by University of Kentucky Markey Cancer Center (MCC) for potential use by NET patients – trial coordinators include the well-known NET specialist Dr Lowell Anthony. The results so far are very interesting. The recent conference reported revised data as follows:

click here or on the poster below to see the trial poster data output.

click to read full screen

As you will see from the poster, there were a wide range of patient types including (but not limited to) small intestinal NETs, bronchial NETs, NETs of unknown primary, gastric NETS, pancreatic NETs and one high grade neuroendocrine carcinoma of the prostate.

A follow on Phase 2 trial is now recruiting with the following detail available:

1. Up to 30 patients will be recruited.

2. The trial is coordinated by Markey Cancer Centre, Kentucky.

3. There will be two cohorts, those with carcinoid syndrome and those without.

4. The trial will run from December 2018 to August 2020.

Click here to see the trial information – important to note the inclusion and exclusion criteria.

Please also note there’s a plan for a follow on trial covering more locations. I will update further when known.

Can I buy Enterade now?

The product is available in North America on Amazon.com, www.enterade.com and 1-855-enterade. However, the parent company (Entrinsic Health) recently announced a partnership with global company Nestlé Health Science to provides worldwide commercial license and supply agreement for enterade®. The announcement is linked here:

Please note this is not a recommendation to go out and buy the product. It is actually described as a ‘medical food’ and is formulated to be consumed or administered under the supervision of a physician.

Further reading:

4. If you are interested in more information about how enterade® works, check out this short video

Disclaimer

Please note this is not a recommendation to go out and buy the product. It is actually described as a ‘medical food’ and is formulated to be consumed or administered under the supervision of a physician.

A great start to the year in both NETs in the news and my social media activity. Of course the headline is the US FDA approvalof Lutathera (Lu-177) – i.e. PRRT

I caught this news in my social media NET

FDA finally approves PRRT in USA. Long awaited and has caused much excitement on all forms of social media. I’m very pleased for my USA friends but we mustn’t forget it’s also required in so many other places. Help me populate locations in my live article on PRRT click here.

NET Epidemiology continues to be discussed and (yet) another well known NET expert confirms my 2 year old article saying that the disease can no longer be considered rare. I suspect more dominoes will follow. Click here for the evidence.

MIDATECH Pharma announced intention to carry out human trials of Q-Octreotide – check out my article covering this potential new drug. Click here

Blog Site Activity

Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Jan 2018 may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer

Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so).

The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

As the number of people contacting me has increased so much, I’ve set up a chat room here (I’m not the only one who can answer questions!). This is not a forum, it’s a place to make people feel safe and to discuss. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat will be about PERT (Creon etc) – date to be confirmed by probably around end of Feb). Join by clicking here (please answer the 3 simple questions)

New Audiences for NET Cancer

From Day 1, I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. I’m doing this although it may not always be apparent. For example. my story is featured on World Cancer Day – click here. Please join my World Cancer Day calendar event to be reminded each year – click hereand select ‘Going’.

Article features.

Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click hereto read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:

“Cancer isn’t all about me”“Poker Face or Cancer Card”

Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs. In Jan, I tweeted 187 times on my personal account which led to over 145,000 views. I was mentioned 101 times by other tweeters, 3003 people looked at my profile and I gained 67 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.

Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view and I’ve had a growth spurt in January. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.

WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation!

Speaking Engagements

I’ve been invited to speak to a local (ish) NET patient support group, just tying up the details (watch this space).

Social Media and Stats

Blog Milestone. At the end of January, I accelerated past 470,000 blog views! Thank you all so much ♥ Keep sharing! On track for half a million by end of February.

Facebook Milestone. I have my eyes set on 6000 followers by the end of March, could be sooner with your direct involvement! The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 250 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Facebook – 5705. This is a key outlet for my blog – pleaseencourage others to like my page(if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).

Most blog views in one month: 25955 in January 2018. Why the spike? ….. See January activity above,

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

After 7 years of avoiding pancreatic enzyme replacement therapy (PERT), I finally asked for some on a trial basis. To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs). I’ve always known I’ve had some digestive issues related to malabsorption. However, I’m not losing weight – this has been stable for some years. Plus my key vitamin levels (B12 and D) are in range. However, I’ve been struggling with a lot of bloating issues in the last couple of months, thus the trial. You know me, I like to research and analyse such things! I’ve actually written about a lot of these issues in my Nutrition series ….. so this is now ‘Article Number 5’.

Crash Course.We eat food, but our digestive system doesn’t absorb food, it absorbs nutrients. Food has to be broken down from things like steak and broccoli into its nutrient pieces: amino acids (from proteins), fatty acids and cholesterol (from fats), and simple sugars (from carbohydrates), as well as vitamins, minerals, and a variety of other plant and animal compounds. Digestive enzymes, primarily produced in the pancreas and small intestine, break down our food into nutrients so that our bodies can absorb them.

Background

Some of the common symptoms of NETs are gas, bloating, cramping and abdominal pain and the root cause of these issues can sometimes be as a result of insufficient ‘digestive’ enzymes. They are primarily produced in the pancreas (an exocrine function) and the small intestine but also in the saliva glands and the stomach. This post will focus on pancreas and to a certain extent, the small intestine. There are actually some key tell-tale signs of a pancreatic enzyme deficiency, such as steatorrhoea which is described as an excess of fat in faeces, the stool may float due to trapped air, the stool can be pale in colour, may be foul-smelling, and you may also notice droplets of oil or a ‘slick’ in the toilet pan. Steatorrhoea is mainly (but not always) due to malabsorption of fat from the diet and this can actually be caused or made worse by somatostatin analogues which are known to inhibit the supply of pancreatic enzymes. Of course if fat is not being absorbed, then the key nutrients your body needs to function properly might not be either. The signs from that might not be so noticeable but can be even more problematic over time. Please see Article 1.

Those who have had surgery, in particular, in GI tract/digestive system, are at risk of malabsorption; as are those prescribed somatostatin analogues (Lanreotide/Octreotide) as these drugs can inhibit digestive enzymes, causing or adding to the malabsorption effect. For those who need to read more, see Article 2.

One way to combat these issues when they are caused by pancreatic insufficiency is with Pancreatic Enzyme Replacement Therapy (PERT) which can mimic the normal digestive process. However, this is not the whole story as there could be numerous reasons for these issues, perhaps even some which are unrelated to NETs. If you are in doubt about whether you suffer from malabsorption and/or any form of digestive enzyme insufficiency, you should consult your doctors.

Pancreatic Enzyme Replacement Therapy

Many NET patients succumb to malabsorption due to pancreatic insufficiency and are prescribed Pancreatic Enzyme Replacement Therapy, or PERT for short. There are various brands available (e.g. Creon®, Nutrizym®, Pancrease HL® or Pancrex®). Most are in capsule form in various doses.

How does PERT work? Most people experiencing the issues above are going to benefit from a multiple-enzyme replacement which tend to include the key ones such as:

The dose sizes tend to be based on the amount of lipase, i.e. a 25,000 strength would mean 25,000 units of lipase and (normally) a lesser amount of amylase and protease (it is with Creon). The entire mix of enzymes may be given a name, in my case it’s ‘Pancreatin’. You will be given a number of capsules to be used from your prescribing doctor.

The pancreatic enzyme capsule is swallowed along with food and digests food as they pass through the gut. If your capsules contain an enteric coat or enteric coated granules (delayed release), they should not be affected by stomach acid. The replacement enzymes will help to break down food allowing the nutrients to be absorbed beyond the stomach (i.e. in the small intestine). Do not be alarmed at the dose sizes, a healthy pancreas will release about 720,000 lipase units during every meal!

Frequently Asked Questions (FAQ)

When I first started taking the supplements, I thought of numerous questions, many of which I could not find definitive answers to! Different sites say different (and contradictory) things. Clearly, you should always consult your prescribing doctor and the medicine patient information leaflet. That said, I found the patient information leaflet which came with the capsules is just not detailed enough for an inquisitive patient such as myself!

I always like to refer to best practice which is why I’ve consulted one of the top NET Dietitians, Tara Whyand of Royal Free London. She agreed to an online Q&A session on 28 Feb 2018. This took place on my private Facebook group click here or search Facebook for this group “Neuroendocrine Cancer – Ronny Allan’s Group“. Join, answer some simple questions and then your application will be processed.

The output from the online with with Tara Whyand is below:

Thanks for attending the online event. Here is a tidy summary of the many comments. I hope this is also useful for those who were unable to attend.

Why would I need PERT and are there any tests that can be done to validate this?

“Somatostatin analogues, pancreatic surgery, pancreatitis and cystic fibrosis can cause exocrine pancreatic insufficiency (EPI). This means that the pancreas does not produce enough enzymes to break down food. It results in fatty loose stools called steatorrhoea.

Patients who have exocrine pancreatic insufficiency (EPI) require PERT (pancreatic enzyme replacement therapy) to break down food (fat, protein and carbohydrate). There are many brands of pancreatic enzymes, the most commonly used are Creon and Nutrizyme. Both have different dose levels to choose from.

The fecal elastase test was traditionally used to test the function of the pancreas, although it may not be that useful in NETs. This is because a NET team in Wales found that some NET patients who reported steatorrhoea had a false negative result.

Steatorrhoea may also be a result of bile acid malabsorption and small intestinal bacterial overgrowth which can co-exist and are common especially after surgery. They can both be tested for at a hospital.”

Supplementary Questions:

1a. Would the treatment be different for both EPI and bile acid malabsorption? If not how different?

“Yes BAM requires bile acid sequestrants rather than PERT”.

1b. would this be something you would take in general to help overall digestion and absorption of nutrients?

“No only if you have reasons for EPI to occur”.

PERT dosage. Is there a set dosage for all patients or does it depend on type of NET or surgery? And can I overdose on PERT?

“It depends on what you eat. PERT dose is normally tailored on fat content (the more fat you have, the more enzymes you need), but patients who have had a total pancreatectomy will have to have PERT for all food and drink (apart from water) as carbohydrate and protein needs to be broken down too.”

Supplementary Questions

2a. “What about when taking medication such as Cholesteramine or pills in the morning and evening. Do I need to take it to absorb these?”

“see question 5”.

2b. I had a total pancreatectomy and was told I do not need PERT for fruit and veg?

“there’s carbs in all fruit and veg and often fat and protein too, so no different really.”

Some sources say to take the capsules at the beginning of a meal, some say it’s also at the end of a meal is also OK. How critical is this?

“You must always take the capsules at the beginning of the meal and if the meal goes on longer than ~30 minutes, or there are several courses, you will need to have another capsule/tablet/scoop of enzymes. If you don’t, food will pass by the pancreas undigested and ‘malabsorption occurs. This leads to fatty stools (steatorrhoea), fat soluble vitamin deficiency and weight loss. Unbroken down food can also feed bacteria and you can develop small intestinal bacterial overgrowth as a result.”

Supplementary Questions

3a. so if my oncologist says to take four capsules per meal, then I should take all four at the same time?

“see question 11”

3b. if you have had a total gastrectomy (total removal of the stomach), is there a different procedure for taking PERT? I am on Creon and have heard that perhaps I need to open up the capsules as I can not break down the gelatin casing. Not sure if this is true or not.

“See question 11”

What is a meal? Is it multiple courses, or is there a strategy for each individual course? What about snacks? (i.e. a single biscuit with a cup of tea)

“The standard starting dose for snacks: 22-25,000 units lipase, titrating up when symptoms have not resolved. Most people end up taking 44,000-50,000 for snacks.

For main meals start on 44,000/50,000 and most people will need 66,000-100,000 units lipase/meal for the long term.”

Supplementary Questions:

4a. I have to eat multiple small meals a day (like every 3 hours, so 7 to 8 small meals). Is there a limit on the amount of Creon I can take in a day?

“see question 11”

4b. What is a snack?

“No official definition. Something with a little fat and maybe 50-200kcals.

Are there any problems taking PERT at the same time as other drugs? e.g. I like to take my vitamin supplements with food. And it’s recommended that some drugs be taken with food.

“PERT only breaks down food, but it is important to take your PERT to ensure food and drugs are absorbed. If you do not take you PERT with the meal, it is likely that food and drugs will rush through your bowel without being absorbed. There is no problem taking vitamins and minerals with food and PERT.

Supplementary Questions:

5a. I take a probiotic also, when is best time to take this, before, during or after food?

“Timing doesn’t matter”

I heard PERT is a porcine produce but I’m a vegan? Is there anything else for me?

“There are no other recommended products, and you should only have prescription PERT’s. This is for safety and reliability. Other off the shelf enzymes are unlikely to work.

Pigs are not slaughtered for PERT, they are slaughtered for meat and enzymes are a by-product if that makes anyone feel more comfortable with the idea.”

I heard PERT is a porcine produce but my religion does not allow me to eat such produces. Is there anything else for me?

“PERT are only sourced from a pigs pancreas but Jewish and Muslim patients have been granted approval to take the enzymes on medical grounds from their religious leaders because there is no alternative.”

Some doctors are prescribing PPIs along with PERT claiming that they help the PERT do the job. Do you have a view on this and are there any general diet tips to support the job of PERT without resorting to other drugs?

“Yes if you have had a whipples operation or you have acid reflux you must take an anti-acid (proton-pump inhibitor-PPI) drug to reduce the acid level. If left untreated it can cause ulcers, and when they bleed it can sometimes lead to a life threatening situation. PERT are gastro-resistant-they do not work in too high an acid environment. Sometimes a PPI / H2 blocker can decrease the acid level and allow the PERT to work better. There is no other reliable way of reducing stomach acid.

Note: Ronny Allan input that there is information published about the over-subscribing of PPI for long term use. Additionally that some NET specialists are suggesting a preference for H2 Blockers rather than PPI for NET Patients. H2 Receptor Blockers include Nizatidine (Axid), Famotidine (Pepcid, Pepcid AC), Cimetidine (Tagamet, Tagamet HB), Ranitidine (Zantac). The exceptions would be for PPI therapy necessary for Barrett’s Esophagus and Zollinger Ellison Syndrome (Gastrinoma). Details to follow.

Supplementary Questions:

8a. I had a whipples two and a half years ago and have recently stopped taking omperazole as I didn’t seem to need them. Do you think I should still be taking something to reduce acid level anyway?

“yep think you should be on Ranitadine or a PPI long term.”

8b. Is it possible to suffer from excess acid without even knowing it? I also take probiotics, is it possible they could be minimising any excess acid? Also, I seem to be able to eat whatever I want without consequence but am worried now in case I am doing wrong and storing up trouble for myself.

“yes you can have silent reflux but after a total pancreatectomy you needs lots of adjustments and insulin dosing advice.”

How will I know the PERT is working for me? And are there any tests to validate this?

“You will know if your PERT is working well if your symptoms improve – i.e. you get normal (mid brown and formed) stools.

Patients taking enough PERT will not become fat soluble vitamin deficient or lose weight in the long term.

You could do a fecal elastase test (if stools are not liquid), but this is not a very reliable test especially for patients with NETs.

If symptoms do not resolve entirely, there may be a co-existing cause of malabsorption e.g. bile acid malabsorption or small intestinal bacterial overgrowth.”

Supplementary Questions:

9a. With regards to Question 9, how would you know if you have bile acid malabsorption or SIBO? Can you be tested for those?

“If PERT doesn’t resolve things, SIBO testing is another thing to look at using a lactulose drink and hydrogen breath test. If the NET is in the terminal ileum, bile acid malabsorption (BAM) is likely. The test is a SeHCAT scan and treatment usually Questran or Colesevelam.

If I need to stop taking PERT, do I just stop or do I need to taper off consumption over time?

“No, just stop. But only do so if it has caused a side effect and report the reaction to the doctor and pharmaceutical company. If you don’t think they are working, speak with a specialist Dietitian and you may need a PPI or H2 blocker or change brand/dose.”

If someone has had a total gastrectomy, can they take Creon? If so, do they need to open up the pill to remove the gelatin to help the enzymes to work?

“They are to be taken as normally directed. You can open capsules but only into an acidic fruit juice (a pH of 4.5 or below) and swallow immediately. It could be argued that PERT will work most easily in patients having a gastrectomy as you cannot get too high a stomach acid level without stomach P-cells. By the way, shouldn’t be any gelatin in the prescribed PERT”

Supplementary Questions:

11a. Are there any problems with taking too much in a day? I have to have 7 to 8 meals (minimum). I am losing weight. Take with every snack and meal?

“You can overdose – for Creon this is 6000 units lipase per kg of body weight. If you are still losing weight, PERT is not working or something else is the cause of malabsorption”

SUPPLEMENTARY QUESTIONS AT THE END

12A. My steatorrhoea only occurs once/twice a month. Is PERT indicated if steatorrhoea is not chronic?

“Yes, probably need to take all month as steatorrhoea is only a sign of extreme malabsorption, small amounts of malabsorption aren’t noticeable visibly but will reflect in weight and blood vitamin levels.”

12B. I do not need Creon as I am a Lung NET; although I have had my gall bladder removed.

“May need PERT if on somatostatin analogues. Some people take a bile acid sequestrants after gall bladder removal. PERT won’t work for that.”

Summary

I’ve always known about issues such as steatorrhoea and vitamin/mineral deficiency. My weight is fine but very happy to trial PERT to see the differences. I made a mistake of starting the capsules on Dec 23rd just before Christmas – it made for an interesting week! Early days so far but I’m getting used to taking them (and remembering to take them ….). Still seeing signs of steatorrhoea but am tracking this against diet, No change to stool frequency. I would appear to be belching more though! I will keep this post live as I learn more.

You may wish to see the output from an online chat I carried out, the link is above.

RadioMedix Inc. and Areva (parent company Orano Med) announced the initiation in the United States of Phase 1 trial for AlphaMedixTM in patients with somatostatin receptor (SSTR) positive Neuroendocrine Tumors (NETs). AlphaMedixTM is composed of a somatostatin analogue radiolabeled with 212Pb, an isotope used for Targeted Alpha-emitter Therapy (TAT). This open-label, dose escalation study’s objective is to determine safety, bio-distribution, and preliminary effectiveness of 212 Pb-AR-RMX in adult patients with differentiated (sic) NETs. “Targeted Alpha-emitter Therapy (TAT) is the wave of the future in nuclear oncology and has a tremendous potential to treat patients with NET and overcome some of the limitations of current Peptide Receptor Radionuclide Therapy (PRRT)” said Dr. Ebrahim S. Delpassand, Chairman and CEO of RadioMedix, sponsor of the trial. They further announced on 21 Feb 2018 that the first patients had undergone some treatment.

What is Targeted Alpha-emitter Therapy? Targeted Alpha Therapy is based on the coupling of alpha particle emitting radioisotopes to tumour selective carrier molecules, such as monoclonal antibodies or peptides. These molecules have the ability to selectively target tumour cells even if they are spread throughout the body. They recognize the targeted cancer cells through antigens that are expressed on the cell surface and can bind selectively to these cells, similar a key fitting into a lock. In targeted alpha therapy these carrier molecules serve as vehicles to transport the radioisotopes to the cancer cells. This is called the “magic bullet” approach. Radioisotopes that emit alpha particles seem particularly promising to selectively destroy cancer cells. Alpha particles have a high energy in the range of 5-9 MeV and at the same time a very short path length in human tissue below 0.1 mm, corresponding to less than 10 cell diameters. Consequently, the use of alpha emitters allows the specific targeting and killing of individual malignant cells, while minimizing the toxicity to surrounding healthy tissue. Extracted from EU Science Hub

According to the clinical trials document, this drug addresses an unmet need in the field of peptide receptor radionuclide therapy (PRRT) for NETs. Substitution of an alpha emitter (²¹²Pb) for the beta emitters currently being used (i.e., 177Lu or 90Y) will provide significantly higher Linear Energy Transfer (LET) and a shorter path length. Higher LET particles should cause more tumor cell death. Shorter path length should result in less collateral damage of the normal tissue and therefore less side effects for subjects receiving the drug.

What is the difference between PRRT and TAT? From the scant ‘patient understandable‘ information currently available, it would appear that TAT has the potential to be more targeted and less toxic than PRRT – to me that seems like it would be able to target smaller tumors. I also noted that TAT is sometimes described as a ‘radioimmuotherapy’ or ‘alpha immunotherpy’, indicating the mechanism of action is significantly different to that of conventional PRRT. It was also described as a ‘Trojan Horse’ which would seem to hint at its immunotherapy credentials.

I noted that TAT is also being studied for use in Prostate Cancer and Leukaemia.

HAPPY NEW YEAR and welcome to Ronny Allan’s Community newsletter for December 2017. A quieter month due to the holiday season in the latter half. I was generally quieter in the first half too, maybe that’s a good thing? Nonetheless, I still managed to accumulate nearly 20,000 hits this month.

At the end of 2017, I’ve been reflecting on the amazing support from you guys. I’m a bit ‘discombobulated’ but also proud to see that I’ve had an amazing quarter of a million hits on my blog site in 2017 alone, double the 2016 figure. It seems almost impossible to carry that momentum on in 2018 but I’ll give it a go! Check out my top 6 posts of 2017 by clicking here.

ALSO …. I’m offering Google translate on each blog page and post to better service my international followers.

I caught this news in my social media NET

NET Incidence UK. New figures from Public Health England confirms the incidence of NETs continues to rise supporting my 2 year old article indicating it was not rare, just less common. The data was published quietly by NET Patient Foundation in their December 2017 newsletter. Check out the new data by clicking here.

PRRT. Anticipation is rising awaiting the US FDA approval and a NICE statement on expansion in England. In Scotland, I have anecdotal evidence that PRRT is being set up as a routine service in Glasgow Beaston (will update you when I have something concrete). Read the updated post here.

Pheochromocyoma/Paraganglioma. Check out news of a new drug in the pipeline – Azedra (not approved yet) – click here.

Blog Site Activity

Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Dec 2017 may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer

Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so)

The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

In December, the total number of people from USA on my main Facebook page exceeded 3000 – check out the announcement here.

New Audiences for NET Cancer

From Day 1, I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. I’m doing this although it may not always be apparent.

Article features.

Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click hereto read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:

“Cancer isn’t all about me”“Poker Face or Cancer Card”

Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs. In Dec, I tweeted 140 times on my personal account which led to over 100,000 views. I was mentioned 90 times by other tweeters, 2526 people looked at my profile and I gained 40 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.

Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email. I’ve been pushing this newsletter quite a bit in Dec which has upped my subscriber base to 415 – a 10% increase on last month.

WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation!

Speaking Engagements

On 16 November, I spoke for around 45 minutes at an Ipsen sponsored NET Nurse event in Birmingham. Tough gig! Post to follow when I have the official photos. Still waiting on feedback from the sponsor.

Watch this space as I’m working on quite a few projects concurrently.

Social Media and Stats

Blog Milestone. In December, I accelerated past 445,000 views! Thank you all so much ♥ Keep sharing! On track for half a million by end of February 2018.

Facebook Milestone. I would love to have achieved 6000 followers by the end of 2017 but that is now an almost impossible challenge without your direct involvement! The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 240 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Facebook – 5583. This is a key outlet for my blog – pleaseencourage others to like my page(if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

This is an excellent and positive video based overview of where we are with the Management of NETs. This is a presentation from a NET Specialist (who some of you may know) presenting to a “GI Malignancies” conference. This is therefore not only awareness of NETs, it’s also some good education for non NET GI experts who may only know the very basics. Useful for patients too! I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles.

The classification picture is good as it explains the different facets of NETs and how NETs are classified and categorised in a general way – not seen it done this way before. Slightly out of date as it does not adequately convey the possibility of a well differentiated high grade recently classified by the World Health Organisation – read more here.

Amazingly it is delivered without using the word ‘carcinoid’ other than in reference to syndrome, indicating it can be done and is something also being reflected in all my posts to ensure they are up to date with the latest nomenclature. It’s also a good example for GI doctors as this branch of medicine is often involved in NET diagnostics and surveillance.

Excellent update of all the trials which have introduced treatments in the last decade.

Great update and worth the 30 minutes it takes to watch – you can view it CLICK HERE.

Welcome to Ronny Allan’s Community newsletter for November 2017. A very strong beginning of the month due to massive support for my Halloween themed but very serious and hard-hitting post “Neuroendocrine Tumors – no treats, just tricks“. If you’ve not seen it or commented on it, check it out here on the Facebook site (currently 724 shares). I suspect the number of shares will never be beaten (there were 652 within 36 hours) and as far as I know perhaps this is now the most shared NET awareness post ever on social media. The support for this single post was so phenomenal; it actually eclipsed my entire NET Cancer Day effort on 10 Nov! I am so grateful to those who made that happen ♥

That said, I was actually pretty quiet on NET Cancer Day. You have to remember that my contribution is mostly social media, that is my strong point and that is where I focus. It’s a great platform in the ‘awareness battlespace’ for many medical conditions. Moreover, it is where we will find new audiences. More and more doctors of all specialities are joining social media on a daily basis – we need them to find out about NETs.

I was quiet for much of November due to a wee bit of exhaustion, coupled with a slight depression that another year of ‘same old’ messages was taking place. Despite this, I still managed to dominate the social media #LetsTalkAboutNETs campaign.

If English is not your first language, please check out my language gadget on each page and post of my blog site:

I caught this news in my social media NET

(did you see what I did there?)

Pheochromocytoma is something I’ve written about before but this video from NET Cancer Day (courtesy of the PheoPara Alliance) is a classic example of how I believe we should do awareness – it’s about real things happening to real people rather than gimmicky BAWSA stuff. If you have not seen this short video, check it out here.

New Treatments on the horizon – short video from Dr Matthew Kulke with my additional comment – check it our here

Blog Site Activity

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

Other Activity

November didn’t seem like a busier month in terms of blogging despite several personal challenges and external projects on the go. Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time. I still managed to break records in November, mainly due follow on support for my Halloween themed post on 31st Oct. Thank you all so much for the support.

I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer

Please also note I cannot accept telephone or video calls on a one to one basis (please just message me and I will respond). Also, the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Awareness Activity in November 2017

New Audiences for NET Cancer. From Day 1, I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. I’m doing this!

Article features.

Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click hereto read more. In October, I was featured in Cure Magazine twice:

“Cancer isn’t all about me”“Poker Face or Cancer Card”

Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs. In Nov, I tweeted 250 times on my personal account which led to 152,000 views. I was mentioned 160 times by other tweeters, 3322 people looked at my profile and I gained 48 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.

Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email. Currently 387 subscribers – up 13 on last month.

WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation!

Macmillan Cancer Support. I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum. In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities. This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation. They published an article recognising NET Cancer Day (might be the first time they ever did) – check it out here:

Speaking Engagements

On 16 November, I spoke for around 45 minutes at an Ipsen sponsored NET Nurse event in Birmingham. Tough gig! Post to follow when I have the official photos.

Writing and other types of Engagement (external)

Watch this space as I’m working on quite a few projects concurrently.

Social Media and Stats

Blog Milestone. In November, I accelerated past 430,000 views! Thank you all so much ♥ Keep sharing! On track for half a million by end of February 2018.

Facebook Milestone. I would love to achieve 6000 followers by the end of 2017 but that is now an almost impossible challenge without your direct involvement! The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 230 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Facebook – 5466. This is a key outlet for my blog – please encourage others to like my page(if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).

WOW! – that’s an amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery. It had taken 12 days for me to feel strong enough to venture onto social media with a simple message “I’m feeling perkier”. For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed. I guess I met some of these descriptors most of the time! I had gotten through the worst and the light at the end of the tunnel was now a faint glimmer.

I’ve recently had a ton of ‘7 years ago cancerversaries’ and there’s still a few to go! I’m currently being reminded of an issue that started just after my initial treatment and by coincidence (perhaps?) the commencement of my Lanreotide (Somatuline Autogel). Itching! However, for me, it’s mainly the right leg below the knee (go figure!). Much less frequently on my arms and sides. I know many people have the same issue but no-one ever seems to find out why – I guess it’s that Neuroendocrine jigsaw thing again?

Initially, I put the issue down to Lanreotide, as this is mentioned in the side effect list on the drug instructions. The initial connection was made because it seemed to be happening immediately after my monthly ‘dart’. A really annoying itch mostly around my ankles and which had to be scratched! An application of a general emollient cream for a few days seemed to do the trick and after a week it was gone (until the next injection …..). However, after a few years, I sensed the issue was drifting away from the injection cycle and adopting a different and more random pattern. I’m also suspicious of a nutritional connection and checking my article Nutrition for NETs -Vitamins and Mineral Challenges, I can see Vit B3 (Niacin) and Vit E are mentioned in regards skin issues. I’d be confused if this was an issue today as I now take plenty supplements to offset GI malabsorption. However, I probably wasn’t taking sufficient between surgery and 2013 as I lacked the knowledge to do so at the time. So nutritional deficiency remains a possibility or at least an added complication. The most recent outbreak has unusually gone on for the last 4 weeks.

I also seem to have had an eczema type issue in my right ear and mild rosacea for more than 7 years (pre diagnosis). As you can imagine my ‘inner detective’ is working overtime! One thing is clear – this itchy leg issue has plagued me for 7 years.

I know that many people have real issues with rashes and skin itching, I’ve seen this so many times with some people describing it as severe. Clearly when this is the case, a doctor’s intervention is generally required. I’ve seen the following connections to NETs and skin issues:

Glucagonoma – a type of functioning pNET can often come with dermatological issues.

Of course there is a Neuroendocrine Carcinoma of the skin known as Merkel Cell Carcinoma – more of a skin lesion effect than regular dermatological issues.

Edit: 2019. Winter in UK has made my itching seem worse, perhaps the cold weather plays a factor. Maybe I just currently have what many people have – dry flaky skin and the onset of winter probably isn’t helping?

Hi NETworkers!

Welcome to Ronny Allan’s Community newsletter for October 2017. A very strong end of the month due to massive support for my Halloween themed but very serious and hard-hitting post “Neuroendocrine Tumors – no treats, just tricks”. If you’ve not seen it or commented on it, check it out here on the Facebook site. I suspect the number of shares will never be beaten (652 in 36 hours). 31 Oct 2017 is now the biggest number of views on any one day, breaking the previous record set in Jan 2017. It also made October 2017 the highest monthly views ever. I am so grateful to those who made that happen ♥

What’s in the NET News

The following news items may be of interest:

The huge (but expected) news that Novartis Novartis (manufacturers of Octreotide) is purchasing Advanced Accelerator Applications (AAA) (manufacturers of Lutathera Lu-177 (as used in PRRT)). This is a significant acquisition and should benefit the NET community given the size of Novartis and the potential of PRRT worldwide. It will be interesting to see if this has an impact on the UK approval

I wasn’t at NANETS but did check most of the output consolidated into this post – Read more here

GA-68 PET (NETSPOT) continues to roll out across the USA, see CCFs latest list by clicking here.

Made it to 3 finals in the WEGO Health awards, I posted about this here.

Blog Site?

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

Other Activity

October was a busier month in terms of blogging despite several personal challenges and external projects on the go. Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time. I still managed to break 2 records in October, mainly due to my Halloween themed post on 31st. The biggest amount of view in any one day had stood since Jan 2017 and was totally smashed, as was the best month too. Thank you all so much for the support.

I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer. Please also note that I cannot accept telephone calls on a one to one basis. Also, the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Awareness Activity in October 2017

New Audiences for NET Cancer. From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community. I’m doing this!

Article features.

Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click hereto read more. In October, I was featured in Cure Magazine twice:

“Cancer isn’t all about me”“Poker Face or Cancer Card”

Twitter. I took part in a WEGO Health patient leader chat on twitter where I was able to contribute to some general cancer questions (subject chronic illnesses). It was attended by many patient advocates representing many different conditions. The taking part in these activities is time-consuming and mentally hard work but it does allow me to grow as a general patient advocate and to occasionally mention “Neuroendocrine Cancer” spreads awareness to new audiences! A summary of the conversation can be found here.

I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). In Oct, I tweeted 218 times on my personal account which lead to almost 89,000 views. I was mentioned 160 times by other tweeters and gained 49 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.

Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email. Currently 374 subscribers – up 11% on last month.

WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation!

Macmillan Cancer Support. I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum. In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities. This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation. They have recently agreed to feature NETs on 10 Nov 17 and I’m writing an article in preparation.

that’s me in the centre

Speaking Engagements

I was delighted to speak to the South Wales NET patient group (sponsored by NET Patient Foundation). Here’s some pictures of Chris and I with the group and the local NET Specialist. Dr Mo Khan is setting up a brand new NET Service in Wales – great news for this group.

On 16 November, subject to contract, I’ve been invited to speak for around an 45 minutes at an Ipsen sponsored NET Nurse event in Birmingham. Tough gig! Post to follow if allowed by contractual arrangements.

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently. I’m currently in a pool of patients who may be featured in a UK national, fingers crossed. Writing an article for Macmillan on NET Cancer Day.

Social Media and Stats

Blog Milestone. In October, I accelerated past 400,000 views! Thank you all so much ♥ Keep sharing! On track for half a million by Easter 2018.

Facebook Milestone. I would love to achieve 6000 followers by the end of 2017 but this will be a challenge. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 230 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Facebook – 5337. This is a key outlet for my blog – please encourage others to like my page(if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).

WOW! – that’s an amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

There’s a lot of scary diseases in this world but some of them are particularly spooky. One such spooky disease is the lesser known type of cancer that infiltrated my body – Neuroendocrine Cancer (aka Neuroendocrine Tumors or NET for short). Not only is it scary and spooky, but it’s also cunning, devious, misleading, double-crossing, and it likes nothing better than to play tricks on you.

It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum and a host of other places. It can be fiendishly small to avoid being seen. Once it’s established in the primary location (….or locations), it will try to break out via your blood and lymphatic systems. It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones and any other place it can get to.

It can often be uncannily quiet, not showing any symptoms. However, sometimes it wants to have fun by over-secreting certain hormones to add or introduce symptoms which mimic many other diseases such as IBS, asthma, abdominal upset, diarrhea, flushing. These are just more tricks up its sleeve. You will go to your doctor, perhaps many times, to report what looks like routine/regular symptoms. Unfortunately, it’s also really good at tricking your doctors. After several visits and despite your concerns, your doctors could become so frustrated that nothing serious is obvious, they might even start to think it’s all in your head. This is exactly what Neuroendocrine Cancer wants, it’s just getting started.

One particular type of NET has a wicked trick up its sleeve. This one will over-secrete a hormone called Serotonin which can often cause fibrosis in your abdominal area, potentially causing obstructions and damage to major organs and blood vessels. It’s not finished though, it will also try to introduce fibrosis to the right side of your heart causing more life threatening issues. In addition to common symptoms of flushing, this type and others will also make you feel weak, fatigued, pain, agitated, anxious, dizzy, nauseous, jaundiced, acid reflux, skin irritation, anemic, lose weight and give you heart palpitations. It’s a real Witch’s Brew of symptoms and living with it is often not easy. Its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it.

However, it has a ‘finale’ trick. Neuroendocrine Cancer actually wants to kill you, and if it’s left to plough its relentless path throughout your body, that’s exactly what it will do, slowly but surely.

It’s not just slow and scary, it can also be deadly. Spread the word and help save a life.

If you are suspicious you have Neuroendocrine Cancer but not yet formally diagnosed, you may appreciate this article.

“Cured” – In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you’ve been cured.

I’ve been living with Neuroendocrine Cancer for 8 years so I must be cured, right? Unfortunately not as straightforward as this, and I’m guessing this is the case for many cancers. Doctors clearly need to be careful when saying the word “cured‘ even if there is a small likelihood that a cancer will recur. There’s plenty of ‘conservative’ and alternative terms that can be used, such as ‘stable’, ‘no evidence of disease (NED)’, ‘in remission’ or ‘complete response’. However, I don’t see the latter two much in Neuroendocrine disease circles.

So with all these ‘ifs’ and ‘buts’, what exactly is a cure?

Answering this question isn’t a simple case of ‘yes’ or ‘no’, because it depends on the way that the term ‘cancer’ is defined. It should actually be viewed as an umbrella term for a collection of hundreds of different diseases. They all share the fundamental characteristic of rogue cells growing out of control, but each type of cancer, and each person’s individual cancer, is unique and comes with its own set of challenges.

That’s why it’s very unlikely that there will be one single cure that can wipe out all cancers. That doesn’t mean individual cases of cancer can’t be cured. Many cancers in fact already can be. Scientists aren’t actually on the hunt for a ‘silver bullet’ against all cancers, Quite the opposite. The more scientists get to know each type of cancer inside and out, the greater the chance of finding new ways to tackle these diseases so that more people can survive. Thanks to a much deeper understanding of cell biology and genetics, there exist today a growing number of targeted therapies that have been designed at a molecular level to recognise particular features specific of cancer cells. Along with chemotherapy, surgery and radiotherapy, these treatments—used singly and in combination—have led to a slow, but steady, increase in survival rates. You can definitely count Neuroendocrine Cancer in that category.

Cancer is seen today less as a disease of specific organs, and more as one of molecular mechanisms caused by the mutation of specific genes. The implication of this shift in thinking is that the best treatment for, say, colorectal cancer may turn out to be designed and approved for use against tumors in an entirely different part of the body, such as the breast. We’re certainly seeing that with certain targeted therapies and more recently with Immunotherapy.

Surely a cure is more possible if cancer is diagnosed earlier?

To a certain extent this is true for many types of cancer, not just for NETs. In fact the same scientists did say ….”We detect those attacks when they’re still early, before the cancers have widely spread, at a time when they can still be cured simply by surgery or perhaps surgery and adjuvant therapy, which always works better on smaller tumors.”.

What about Neuroendocrine Tumors (NETs)? Clearly I’m not qualified to make such statements except to say that I am of the opinion that earlier diagnosis is better for any curative scenario. When you read NET guidelines (ENETS/NANETS etc), the word ‘cure’ and ‘curative’ is mentioned in relation to surgery. Bearing in mind that our most expert NET specialists are involved in the drafting of these guidelines, perhaps we should pause and think before dismissing these claims. Having checked ENETS publications, I can see it’s related to certain conditions and factors such as localisation within the organ, tumour size, good resection margins, and a suitable follow-up surveillance.

Clearly with advanced disease, the cancer becomes incurable but treatment for many being palliative to reduce tumor bulk and reduce any symptoms and/or syndrome effects. Despite this, the outlook for metastatic NETs at the lower grades is good. While we’re talking about palliative care, do not confuse this with end of life, that is only one end of the palliative spectrum. It can and is used at the earliest stage of cancer.

Immunotherapy will eventually cure cancer, right?

Immunotherapy will play a huge part in cancer treatment in the future, that we know. But to suggest that it’s a cure is probably overstating its current success. Neuroendocrine Cancer has not been forgotten – you can read more about Neuroendocrine Cancer and Immunotherapy here.

I heard the Oncolytic Virus at Uppsala is a cure for NETs?

There is currently no scientific evidence that the Oncolytic Virus (AdVince) can cure humans with Neuroendocrine Cancer. So far it has only been proven in destroying neuroendocrine tumours in mice. The Oncolytic Viruses developed in Uppsala are now being evaluated in phase I clinical trials for neuroendocrine cancer. If you’re not up to speed with this trial, read more here – Oncolytic Virus Uppsala

Isn’t prevention better than a cure?

This old adage is still relevant BUT latest thinking would indicate it is not applicable to all cancers. Scientists claim that 66% of cancer is simply a form of ‘bad luck’ and if the claim is accurate, it follows that many cancers are simply inevitable. The thinking suggests that random errors occurring during DNA replication in normal stem cells are a major contributing factor in cancer development confirming that “bad luck” explains a far greater number of cancers than do hereditary and environmental factors. This scientific thinking is a tad controversial so it’s worth remembering that even if, as this study suggests, most individual cancer mutations are due to random chance, the researchers also admit that the cancers they cause may still be preventable. It’s complex!

The newspapers are always talking about breakthroughs and cures for cancer?

Newspapers looking for a good headline will use words such as ‘cure’. Sadly, headlines are generally written by sub-editors who scan the article and look to find a ‘reader-oriented angle’ for the heading. They either can’t or don’t have time to understand what’s actually being said. Unfortunately this then leads to people sharing what is now a misleading article without a thought for the impact on those who are worried about the fact they have cancer and whether it can be cured or not. There’s also a lot of fake health news out there – check out my article series about the problems with the internet and ‘Miracle Cures’.

To cure, they must know the cause?

To a certain extent, that’s very accurate. Have you ever wondered what caused your NETs? I did ponder this question in an article here. The only known cause of NETs is currently the proportion of patients with heredity syndromes – see my article of Genetics and Neuroendocrine Cancer. Interestingly, the NET Research Foundation recently awarded funding to look at the causes of Small Intestine (SI) NETs (one of the most common types). A scientific collaboration between UCL, Dana-Farber Cancer Institute, UCSF Medical Centre and the UCL Cancer Institute / Royal Free Hospital London. The team’s approach has the potential to identify inherited, somatic (non-inherited) genetic, epigenetic and infectious causes of SI-NETs. The research is questioning whether SI-NETs are caused by DNA changes in later life or by aberrant genes inherited at birth; environmental influences or infectious agents – or is it a combination of all these factors? Very exciting. Read more here.

What would a cure mean to those living with NETs?

This is something that has crossed my mind, even though I don’t believe it will happen in my lifetime. I guess it would be good to get rid of the known remnant tumors left behind from my treatment (and any micrometastases currently not detectable). However, many NET patients are living with the consequences of cancer and its treatment, including surgery, chemotherapy, biological therapy, somatostatin analogues, radionuclide therapy, liver directed therapy, and others. Many of these effects would remain – let’s face it, a cure is not going to give me back bits of my small and large intestine, liver and an army of lymph nodes. So support for those living with NETs would need to remain despite a cure.

Summary

The emotional aspect of the word ‘cured’ seems to be an issue across many cancers and it’s certainly very controversial in NET circles. The world has still not cured the many cancers that exist. But over the next five to ten years the era of personalised medicine could see enormous progress in making cancer survivable. I think both doctors and patients need to take a pragmatic view on the ‘cured’ word and to end this article I wanted to share an interesting quote I found whilst researching.

Firstly, let me say that I have no intention of advising you how to lose or gain weight! Rather, I’d like to discuss what factors might be involved and why people with NETs might lose or gain weight either at diagnosis or after treatment. Clearly I can talk freely about my own experience and associated weight issues. If nothing else, it might help some in thinking about what is causing their own weight issues.

I wrote a patient story for an organisation over 3 years ago and it started with the words “Did you mean to lose weight”. Those were actually the words a nurse said to me after I nonchalantly told her I thought I’d lost some weight (….about half a stone). I answered the question with “no” and this response triggered a sequence of events that led to all the stories in all the posts in this blog (i.e. my diagnosis).

I annoyingly can’t remember at which point I started to lose the weight but I was initially reported to have Iron Deficiency Anemia due to a low hemoglobin result and my subsequent iron test (Serum Ferritin) was also low and out of normal range. This, combined with the weight loss, the GP was spot on by referring me to a clinic. The sequence of events during the referral led to a diagnosis of metastatic NETs (Small Intestine Primary). If I had been a betting man, I would have put money on my GP thinking “Colorectal Cancer”. So my adage “If your doctors don’t suspect something, they won’t detect anything” applies.

I can also tell you that I weigh myself most days at the same time using the same scales. Weight loss or gain needs to be recorded. Clearly 2 or 3 pounds is nothing to worry about, I found you could put on or lose that amount in a day, depending on time of weighing and food intake. I’m looking for downwards or upwards trends of 7lbs or more (3kg).

Why did I lose weight?

The drop from 12st to 11st was clearly something to do with the anemia symptom (the NETs). But after diagnosis, I had major surgery about 10 weeks later. When I left the hospital after my 19 day stay, I was a whole stone lighter (14 lbs or 6.3 kg). I guess 3 feet of intestine, the cecum, an ascending colon, a bit of a transverse colon together with an army of lymph nodes and other abdominal ‘gubbins’ actually weighs a few pounds.

However, add the gradual introduction of foods to alleviate pressure on the ‘new plumbing’, and this is also going to have an effect on weight. I remember my Oncologist after the surgery saying to use full fat milk – the context is lost in memory but I guess he was trying to help me put weight back on. I also vividly remember many of my clothes not fitting me after this surgery. In fact, since 2010, I’ve actually dropped 2 trouser sizes and one shirt/jumper size. I did spend a lot of time in the toilet over the coming months, so I guess that also had an impact! However, what I wasn’t aware of was the side effect of my surgery. I started to put on some weight in time for my next big surgery – a liver resection. The average adult liver weighs 1.5 kg so I lost another 1 kg in one day based on a 66% liver resection.

However, what was also going on was something that took me a while to figure out – malabsorption and vitamin/mineral deficiency. My new ‘plumbing’ wasn’t really as efficient as my old one, so the malabsorption. issues caused by a lack of terminal ileum was slowly starting to have an effect. The commencement of Lanreotide in Dec 2010 added to this complication. That knowledge led me to understand some of the more esoteric nutritional issues that can have a big effect on NET patients and actually lead to a host of side effects that might be confused with one of the several NET syndromes. What it also confirmed to me was that I could still eat foods I enjoy without worrying too much about the effect on my remnant tumours or the threat of a recurrence of my carcinoid syndrome, something I was experiencing prior to and after diagnosis.

Armed with the ‘consequences of NETs’ knowledge, I did eventually adjust my diet and my weight has now ‘flat-lined’ at around 10 st 7 lbs (give or take 1 or 2 lbs fluctuation). Amazingly, the same weight I was when I left hospital after major surgery, looking thin and gaunt and not very well at all! The difference to day is that I have adapted to my new weight and look fit and healthy.

I actually lost another half a stone (7 lbs or 3.5 kg) in 2014 whilst training for an 84 mile charity walk – many commented that I looked thin and gaunt despite being extremely fit from all the training. Perspectives. It took several months to put the weight back on but at least I knew what had caused the loss and then subsequent gain.

I don’t have any appetite issues although I try to avoid big meals due to a shorter gut, so I snack more. With the exception of the 4 months of intense training for the 84 mile hike, I cannot seem to lose or gain weight. As my current weight is bang in the middle of the BMI green zone (healthy), I’m content.

Why do NET patients lose weight?

That’s a tricky one but any authoritative resource will confirm fairly obvious things such as (but not limited to) loss of appetite and side effects of cancer treatments. NETs can be complex so I resorted to researching the ISI Book on NETs, a favourite resource of mine. I wanted to check out any specific mentions of weight and NETs whether at diagnosis or beyond. Here’s some of the things I found out:

Carcinoid Syndrome. Weight loss is listed but not as high a percentage as I thought – although it tends to be tied into those affected most with diarrhea.

Gastrinoma/Zollinger-Ellison Syndrome. Up to half of these patients will have weight loss at diagnosis.

Glucagonoma. 90% will have weight loss.

Pheochromocytoma. Weight loss is usual.

Somatostatinoma. Weight loss in one-third of pancreatic cases and one-fifth in intestinal cases.

VIPoma. Weight loss is usual.

MEN Syndromes. One of the presentational symptoms can be weight loss.

Secondary Effects of NETs.

Many NETs can result in diabetes (particularly certain pNETs) and as somatostatin analogues can inhibit insulin, it could push those at borderline levels into formal diabetic levels (including any type of NET using long term somatostatin analogues). In people with diabetes, insufficient insulin prevents the body from getting glucose from the blood into the body’s cells to use as energy. When this occurs, the body starts burning fat and muscle for energy, causing a reduction in overall body weight.

It must be emphasised that there will always be exceptions and the above will not apply to every single patient with one of the above.

What about weight gain?

You always associate weight loss with cancer patients but there are some types of NETs and associated syndromes which might actually cause weight gain. Here’s what I found from ISI and other sources (as mentioned):

Cushing’s Syndrome. Centripetal weight gain is mentioned. (Centripetal – tends to the centre of the body). I also noted that Cushing’s Syndrome tends to be much more prevalent in females. Cushing’s syndrome comprises the signs and symptoms caused by excessive amounts of the hormone cortisol (hypercortisolism) or by an overdosage of drugs known as glucocorticoids.

Insulinoma. Weight gain occurs in around 40% of cases, because patients may eat frequently to avoid symptoms. However, according to an Insulinoma support group site, I did note that after treatment (some stability), things can improve.

Again, it must be emphasised that there will always be exceptions and the above will not apply to every single patient with one of the above. As in weight loss scenarios, the Secondary Effects of NETs can have an effect.Hypothyroidism is another potential issue and weight gain is a listed symptom. I just been diagnosed with hypothyroidism this year but I was not gaining weight!

The NETs Jigsaw

Like anything in NETs, things can get complex. So it is entirely possible that weight loss or weight gain is directly caused by NETs, can be caused by side effects/secondary effects of treatment, and it’s also possible that it could be something unrelated to NETs (Dr Liu “Even NET patients get regular illnesses“). I guess some people might have a good idea of the reason for theirs – my initial weight loss was without doubt caused by the cancer and the post diagnostic issues caused by the consequences of the cancer.

Summary

I guess that weight loss or weight gain can be a worry. I also suspect that people might be happy to lose or gain weight if they were under/over weight before diagnosis (every cloud etc). However, if you are progressively losing weight, I encourage you to seek advice soonest or ask to see a dietician (preferably one who understands NETs).

Edit: I changed my blood thinner in May 2017 and lost 2kg (4 pounds) after 6 months.

Edit: I started Creon at the beginning of 2018 (read about this here) and almost immediately put on 2kg (4 pounds) to offset the 2kg loss from 6 months prior. However, no real change after 3 months of Creon (March 2018).

Edit: I was recently diagnosed with Hypothyroidism, one of the symptoms can be weight gain. Clearly that has not applied to me. Hyperthyroidism is the opposite condition where weight loss is a symptom.

Edit: Due to a bad chest infection in June 2018 and due to the consequences of the effects of that illness and most likely the treatments undergone, I have dropped three quarters of a stone (~10lbs). My lightest weight for over 30 years. To me that is a significant loss of weight in such a short space of time. Currently trying to put it back on again – I need the weight!

Edit: 4 Sep 2018. After the 10lbs (~4.5kg) loss following the chest infection, people who see me regularly have noticed the visible difference. I’m still struggling to get back beyond 10st after 2 months. I’m monitoring this really closely.

Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it’s really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight.

Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is on me because these things are necessary to keep me alive for as long as possible and also because I live with the consequences of cancer and its treatment which provides further challenges. A good quality of life is not only a motivator for change, good planning and constant surveillance, but it’s also hard work and has an additional impact on the whole family. It means all activities including work, holidays, days out, social activities and, even the simple act of eating, might all need to be organized around me due to the vagaries of my condition. It will never stop, it will never end and it will always be about me!

This has gone on for seven years and counting. “Cancerversaries” are on the calendar alongside birthdays and wedding anniversaries. Tumor marker tests and scans are reviewed twice yearly so the relentless attention continues, often peaking at these test milestones and worrying moments in between. The detailed analysis of unusual pain or other disturbances are documented. The attention is on me.

Then, my wife finds a lump. The local doctor investigates and refers her for a mammogram. The mammogram check leads to an ultrasound which then leads to a biopsy of some fibrous tissue. We have a two-week wait before the all clear is given but the worry doesn’t immediately dissipate as another check was scheduled for three months (done, no issues). The following check 6 months after on 7 Aug 2018 is also no change. Hang on a minute … this is not about me!

I’m starting to realize it shouldn’t be all about me and it needn’t be all about me. It’s about other people, too. There is nothing in the rule book that allows cancer to be limited to a single family member. Cancer doesn’t really care how many in your household already have the disease – anyone is a target. It’s bad enough having one cancer patient in the house without another cropping up. One thing is for sure, when it comes to a cancer diagnosis in the family, I really want it to be all about me.

Postscript: Very excited to share my first article published in CURE magazine. This is a real story about recent events involving my own family. As a long-term cancer patient, it can seem like it’s always about ‘me’ and then something happens which changes that perception. It’s actually about others too, and always has been. If you want to talk about something similar in your life, please share with others in your comments below or message me.

This is the beginning of a new phase in my activities and another opportunity to spread awareness of Neuroendocrine Cancer to new audiences, something I promised I would do. I hope you will support my first contribution to an exciting organisation brand.

It would be great if you would take the time to read the article directly on the Cure site here, and any likes, comments and sharing would be appreciated.

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is September 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).

NET News

The following news items may be of interest:

The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep. This is the first time the drug has ever been approved, despite being in use for over 10 years. In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not. Read more here.

The European Commission approved the use of XERMELO (telotristat ethyl) for use in Carcinoid Syndrome diarrhea not adequately controlled by somatostatin analogues. Read more here.

The US FDA approved an add-on indication for Lanreotide (Somatuline) for treatment of carcinoid syndrome, adding when used, it reduces the frequency of short-acting somatostatin analogue rescue therapy (….. ergo Octreotide). Read more here.

GA-68 PET (NETSPOT) continues to roll out across the USA, see CCFs latest list by clicking here.

The WEGO Health Finalists were announced on 25 Sep and I’m through to the finals in all 3 awards which you nominated me for. Many thanks for the support! I posted this info here.

Blog Site?

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

The Invisible NET Patient Population. Centred on the issue of a cohort of as yet undiagnosed people with NETs; or have been labelled with another cancer; or have been told their cancer is benign and therefor not recorded.

The WEGO Health Finalists were announced on 25 Sep and I’m through to the finals in all 3 awards which you nominated me for. Many thanks for the support! I posted this info here.

Other Activity

September was a slower month in ‘new’ blogging terms mainly due to personal activities (holiday) and the consequences of being ‘contactable’ by a large internet footprint! Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time. I’m currently seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients (more on this later) – my strategy is constantly under review. However, despite a low month for brand new blogs, I still managed to break through 20,000 views for the 4th month in a row…….. Thank you all so much for the support.

I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer. Please also note that I cannot accept telephone calls on a one to one basis. Also, the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Awareness Activity in September 2017

New Audiences for NET Cancer. From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

Article features. I was featured in a well shared and positive article entitled A revolution in the treatment of Neuroendocrine Tumors. A very positive look at the new treatments coming through. I didn’t agree with some of the content but ‘hey ho’ I cannot control what others write. You can check out the article by clicking here.

Twitter.

I took part in a patient chat on twitter where I was able to contribute to some general cancer questions. It was attended by many patient advocates representing many different conditions. The taking part in these activities is time-consuming and hard work but it does allow me to grow as a general patient advocate and to occasionally mention “Neuroendocrine Cancer” spreads awareness to new audiences. A summary of the conversation can be found here.

I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). In Sept, I tweeted 109 times on my personal account which lead to almost 75,000 views. I was mentioned 78 times by other tweeters and gained 68 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.

Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email. Currently 336 subscribers – up 12% on last month.

WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation!

Macmillan Cancer Support. I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum. In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities. I’ll be reporting more on this in the coming weeks. This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation. On August 30th, one of my blogs made their “top picks” generating some NET awareness – check out Living with Cancer – 6 tips for conquering fear. They have recently agreed to feature NETs on 10 Nov 17.

that’s me in the centre

Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read. Cure Magazine has a readership of 1 million. Click hereto read more.

Speaking Engagements

On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance) Things are starting to happen in this area and I already know their NET Specialist Dr Mo Khan who is working hard on behalf of patients. I’m really looking forward to visiting and talking to this group.

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently. I’m currently in a pool of patients who may be featured in a UK national, fingers crossed.

Social Media and Stats

Blog Milestone. In September, I’m very close to 380,000 views! Thank you all so much ♥ Keep sharing! On track for 400,000 by end of the October.

Facebook Milestone. I would love to achieve 6000 followers by the end of 2017 but this will be a challenge. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Also check out my sister Facebook sites here (click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site:

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Facebook – 5220. This is a key outlet for my blog – please encourage others to like my page(if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).

WOW! – that’s an amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

OPINION. When you’re diagnosed, you go through a whole host of emotions. It’s not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words “you have cancer”, it’s other stuff such as anger and denial. With the latter, the denial normally wears off as you finally accept the predicament.

In hindsight, the anger is interesting because there can be a mixture of thoughts including “why me“, “what could I have done to head this off“; and would you believe I was even angry that my diagnosis was going to affect my performance at work and even my personal credibility. We all react differently but in general terms our experiences can be categorised into 3 main areas: initial reaction, distress and then adjustment.

Initially, I was frustrated I didn’t know what had caused my cancer, perhaps my thinking was that I could warn others. Those feelings soon wore off as I discovered that no-one really knows why people succumb to certain cancers.

If you don’t know what caused your NET, you’re not alone. According to several studies in the past 10 years, around 40% of cancers are preventable indicating that up to 60% might just be plain bad luck. Clearly this figure varies between cancer types with the biggest culprits being Lung and Skin cancer with too much exposure to tobacco and ultraviolet light respectively. However, the reports also pointed out that people can and will still get these cancers without significant exposure to the commonly preventable causes. The latest study is interesting because it raises the issue that some cancers may be totally unavoidable as they are caused by random errors associated with DNA replication. This study remains controversial because it undermines government prevention strategies. There’s a balanced article from Cancer Research UK which is a useful read (interesting quote … “Even if, as this study suggests, most individual cancer mutations are due to random chance, the researchers admit that the cancers they cause may still be preventable”).

I carried out some research and discovered the only currently known causes of NETs are heredity/genetic in nature and this only affects a small proportion of all NETs. As for the remainder, will we ever know? Perhaps one day but in my opinion, not anytime soon. One interesting find is a studyfunded by NET Research Foundation which is designed to discover the molecular causes of a Small Intestine NET (SiNET). In addition, they will investigate potential environmental causes, including epigenomic and infectious causes.

I often think about what actually caused my NET but I no longer worry about what the answer might be. I’m the first to admit I could have led a healthier life (like many others) but that may not have had any impact or involvement in my cancer diagnosis. There doesn’t seem to be any point worrying because the clock cannot be turned back …..even if I knew, I would still have metastatic NETs. However, if the cause of my cancer was connected to a heredity condition, clearly this would be important to know. That’s only my own opinion though.

Almost every day I see something in my news feed about Neuroendocrine Cancer …. an article, a tweet, a blog post, a subscription, an alert of some kind. Certain ones catch my eye and then something in the detail leads me to disappointment at the realisation I’d not be able to share the information because of a major flaw. A common flaw is the failure to recognise that Neuroendocrine Neoplasms (Carcinomas and Tumors) can be found in numerous SITES in the human anatomy. The latest article I read about Steve Jobs was a good read until I noticed it was actually about Pancreatic Cancer and inferred that a pancreatic NET was a subtype of Pancreatic Cancer. I spend a lot of time supporting Pancreatic Cancer because they really need the support, but we do too. The latest celebrity death, Aretha Franklin, has not helped Neuroendocrine Cancer in an awareness sense. There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more.

Of course, there is a trend with famous NET patients being labelled with something else and I outlined this issue in my post “The Human Anatomy of Neuroendocrine Cancer” which already has over 20,000 hits. We need to keep clawing back some of that lost awareness. And we need to continue to emphasise that Neuroendocrine Cancer is NOT a type of another cancer PERIOD. Click here and share please!

I once told a story in a post called “Neuroendocrine – what’s that?“, about my own experience in communicating the details of my condition. To cut a long story short, as soon as I mention my primary SITE was in the ‘intestine’, people assume I have some kind of bowel cancer. Cue – a careful explanation which doubles up as awareness.

Our situation is not helped by many ‘big hitter’ cancer organisations, who mostly tend to list cancers by anatomical SITE, nearly always in alphabetical order. Many of them then add Neuroendocrine Tumors of the Pancreas, Lung, Appendix, to the description for Pancreatic, Lung and Appendiceal Cancer sections respectively, i.e. inferring that they are subtypes of those cancers. I get the reason for the anatomical listing but system wide cancers also need be included, i.e. Neuroendocrine disease should be listed as an entity under N. Which bit of “Neuroendocrine tumors can occur anywhere in the body” is not understood! It is a cancer in its own right, with its own medical coding, its own classification system, its own specialists and specialist centres. It’s not a type of another cancer! That said, you can often find the misnomer term ‘Carcinoid’ listed under ‘C‘ and that is part of the image and awareness problem that results when the correct nomenclature is not used, or, as is the case with many organisations, their sites are not kept up to date.

I once wrote a blog using a title inspired by a patient comment – “The little suckers get everywhere”. This was an early attempt by me to define all the locations I had gathered in from patient comments on my Facebook site. Did I miss any? Please let me know!

Another interesting feature of certain types of Neuroendocrine Cancer is multiple primaries. It’s not uncommon to have multiple primary tumours but they do tend to be in the same organ or site. However, certain uncommon types of Neuroendocrine Cancer such as Pheochromoctyomas/Paragangliomas (including hereditary versions) there can multiple primaries at different sites. Multiple Endocrine Neoplasia (MEN) are a group of disorders (hereditary syndromes) that affect the endocrine system. The disease typically involves Neuroendocrine Tumors in multiple endocrine glands and may cause the glands to become overactive and overproduce hormones.

Clearly we need to ‘raise our sites’and shout louder! My name is Ronny Allan and I have a Neuroendocrine Cancer with a Small Intestinal Primary. I do not have Bowel Cancer!

NET News

However, in UK, there is a threat that PRRT won’t be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA). Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond to the UK’s drug approver NICE’s negative recommendation. Read more here.

GA-68 PET (NETSPOT) is still rolling out across the USA, see CCFs latest list by clicking here.

Ipsen launches the Brazilian version of ‘Living with NETs’ website.Click here. (See the English language version – click here).

What’s happening on my Blog Site?

A quiet month. Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs.

Carcinoid vs Neuroendocrine – One of my most controversial posts – this is an older post which previously had an element of sitting on the fence. I jumped off the fence following some further research and period of reflection. I was happy with some of the positive comments I subsequently received on this post.

Steve Jobs. An updated version with some new research timelines added. This post continues to receive hits daily even when I’m not sharing. Most of the hits are from people searching and find my article online, an indication of the interest Steve Jobs still has today. And many of the hits are NEW audiences.

Misc Blog Stuff

There’s a lot of chatter about use of the word ‘fight’ in cancer parlance but many people are misrepresenting the word’s multiple meanings as per the most eminent English language dictionaries. As for me, I’m ‘sticking to my guns’ on the subject.

I got some great comments on my monthly Lanreotide ‘butt dart’ post. Feel free to add questions. I may know some of the answers and cannot promise answers from Ipsen due to their regulatory arrangements but I will try! Check out the discussion here …… ‘click here’.

My notification about the Ipsen HomeZone (or equivalent services within your own country) got an interesting response. Since then many others have taken advantage by contacting Ipsen or their specialist asking about the service. This has also led to feedback about the similar schemes from Novartis for Octreotide. I’m happy that my post has provided publicity to services which help patients. Read my post At Home with Lanreotide by clicking here.

Other Activity

August was a slower month in ‘new’ blogging terms mainly due to personal activities and the consequences of having a large internet footprint! Striking a balance is becoming more difficult. I’m seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients (more on this later). Also, I’ve been suffering with minor right hip pain but now seeing improvements working with a physiotherapist. However, despite a low month for brand new blogs, I still managed to make the second highest monthly views ever……..Thank you all so much for the support.

I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer. Please also note that I cannot accept telephone calls on a one to one basis. However …..the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

By the time you read this update, the nominations and endorsements for the 2017 WEGO Health Awards will be closed. If you remember last year, I made it to the final in two categories of Blog and Community, and then won the latter. I should find out if I made the finals by the middle of September. Fingers crossed! Many thanks to those who took the time and trouble to vote for me.

Awareness Activity in August 2017

New Audiences for NET Cancer. From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

Article features. I was featured in a well shared and positive article entitled A revolution in the treatment of Neuroendocrine Tumors. A very positive look at the new treatments coming through. I didn’t agree with some of the content but ‘hey ho’ I cannot control what others write. You can check out the article by clicking here.

Twitter. I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). In Aug, I tweeted 130 times on my personal account which lead to almost 90,000 views. I was mentioned 94 times by other tweeters and gained 64 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.

Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email. Currently 294 subscribers – up 10% on last month. Will you be number 300?

WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences.

Macmillan Cancer Support. I’m proud to be a ‘Community Champion’ on the Macmillan Cancer Support Forum helping ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients. I’ll be reporting more on this in the coming weeks. This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation. On August 30th, one of my blogs made their “top picks” generating some NET awareness – check out Living with Cancer – 6 tips for conquering fear

Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read. Cure Magazine has a readership of 1 million. Click hereto read more.

Speaking Engagements

On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance) Things are starting to happen in this area and I already know Dr Mo Khan who is a NET specialist working hard on behalf of patients. I’m really looking forward to visiting and talking to this group.

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently

Remember …….

Social Media and Stats

Blog Milestone. In August, I tipped a 360,000 views! Thank you all so much ♥ Keep sharing! On track for 400000 by end of the October.

Facebook Milestone. I would love to achieve 6000 followers by the end of 2017 but this will be a challenge. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Also check out my sister Facebook sites here (click on ‘Like’).

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Facebook – 5143. This is a key outlet for my blog – please encourage others to like my page(if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).

WOW! – that’s an amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.